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Have Your Say On PA

7 Apr, 2021

When the pandemic led to changes in patients’ treatment, we became aware that far too many patients were suffering harm because either their treatment was stopped, or they were told to find an alternative way to treat themselves. Despite ongoing research, there are still many questions about the diagnosis and treatment of Pernicious Anaemia that remain unanswered.

James Lind Alliance

The James Lind Alliance (JLA) is an initiative that brings patients, carers and clinicians together in Priority Setting Partnerships (PSPs) to identify and prioritise the Top 10 unanswered questions or evidence uncertainties that they agree are the most important. We contacted the JLA last year to set up a Priority Setting Partnership for Pernicious Anaemia. PSP’s enable clinicians, patients and carers to work together to identify and prioritise evidence uncertainties in particular areas of health and care that could be answered by research. The JLA facilitates these partnerships, but the funding and organising is supplied by the PSP itself.

Identifying Uncertainties

The aim of the Pernicious Anaemia PSP is to identify the unanswered questions about Pernicious Anaemia from patient, carer and clinical perspectives and then prioritise those that patients, carers and clinicians agree are the most important for research to address.
The objectives of the PSP are to:

  • work with patients, carers and clinicians to identify uncertainties about the Diagnosis and Management of Pernicious Anaemia and to agree by consensus a prioritised list of those uncertainties, for research
  • publicise the results of the PSP and the process
  • take the results to research commissioning bodies to be considered for funding.

For the first time, patients, clinicians, healthcare professionals and anyone else with an interest in how Pernicious Anaemia is diagnosed and treated will be given the opportunity to give their opinion on what researchers need to address in all things to do with Pernicious Anaemia. We had a series of online meetings with Officials at the JLA during October and held our first meeting of the Steering Group in November.

Steering Group

The project is managed by a Steering Group, led by an independent chair from the JLA. The Steering Group includes patient representatives as well as professionals. The role of the Steering Group is to manage the PSP, ensuring that it is delivered in a timely way and adheres to the JLA’s key principles of transparency, inclusion/exclusion, equality of voice and use of the existing evidence base.

steering group
Obviously, patients are a very important group who are in a unique position to identify problems with the diagnostic procedures and issues with their treatment. But there are also doctors who are aware of the serious shortcomings in diagnosis and treatment of the disease as well as other interested parties including laboratory managers, representatives of patient groups whose members were originally wrongly diagnosed, pharmacists, biochemists and health service providers including regional governments who, among others, have agreed to distribute the survey among their colleagues and organisations.

Developing the Protocol and the Survey

The first meetings of the Steering Group focused on developing the protocol, the terms of reference, the plan of action and finding potential partners for the PSP. The Steering Group then formulated a Survey that will be sent to you, clinicians and other healthcare professionals who have an interest in Pernicious Anaemia. It’s surprising how many people have a vested interest in identifying and addressing the uncertainties with the diagnosis and treatment of PA. The Pilot survey was distributed last month and minor tweaks were made following very useful feedback. Our thanks to those who took part in the pilot study and for their comments. The survey will provide us with a long list of questions and then a workshop will he held to whittle these down to a ‘short-list’ which will then be ‘evidence-checked’. We will then come back to you with this list, so patients and healthcare professionals are able to vote on what they consider to be the most important questions.
The highest ranked questions from that interim priority setting survey are discussed in a number of workshops of patients and clinicians who together agree the ‘Top 10’ list of priorities. This ‘Top 10’ will be announced and published on the Pernicious Anaemia Society website and the James Lind Alliance website and promoted to researchers and funders.

This is an excellent opportunity for you to identify problems with getting diagnosed and treated. We will be working hard to ensure that those problems identified by you, will become topics that will be thoroughly researched and hopefully addressed one way or another.

Your experience with Pernicious Anaemia is critical

We want as many of you as possible to complete the survey which we’ve designed so that it’s easy to understand and use. Most people in the pilot completed the survey in around ten minutes – but the good thing is that there’s no time limit so you can take as long as you want to point out the problems that you have identified with not only the diagnosis of PA but also the treatment and management of the disease. The survey is open to anyone living in the UK. If you suspect you have Pernicious Anaemia but have not had a firm diagnosis, you may still complete this survey. Thank you for taking the time to complete this survey. Your support is greatly appreciated!

Have your say on Pernicious Anaemia Research!

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9 Comments

  1. Thrones

    Very easy survey to complete so please help with this.We need more research on why the prescribed regime on NHS is simply inadequate for a lot of patients with p.a .There are too many of us having to buy our b12 from pharmacies abroad and we have to learn how to self inject because the prescribing of a simple vitamin is totally inadequate for our individual needs.I am a different person compared to 12 months ago and I can maintain this as long as I get the frequency of injections needed.The ranges of serum blood tests are meaningless because the reality is our bodies cannot process the b12 Thats floating around in our blood serum,we need high doses of b12 to stop debilitating symptoms and keep us reasonably well but we also need to know why this is and change the thinking of our medical professionals.definately more research is needed.

    Reply
    • Randi Waldman

      How do I join?

      Reply
      • Randi Waldman

        I have been taking b12 shots for 15 years. I was diagnosed back then from a blood test with Pernicious Anemia. Last blood test showed high numbers f 1254 and usually my numbers had been in 400 t 600 in last two years. That 1254 test I believe was high because he doctor took blood four days after the shot, mi am repeat test next week and haven’t taken a shot in a minute nth, doctor is saying he doesn’t want to give shots unless numbers go below 200. I thought nice you are diagnosed with pernicious anemia you are supposed to stay on the b12 shots, I had MMA test which was also in range. Please help me if anyone knows? Randi

        Reply
  2. Cheryl Mattey

    This is an uplifting piece of news. Good to hear that those without a PA diagnosis have an opportunity to voice their opinions too. I hope you get plenty of response. The form was easy to complete, and glad to see you can take your time in answering each question- some of us can’t do much within 10 minutes. As usual, way too much to say !
    PS: Very glad to see that Jacqui is involved in the Steering Group !

    Reply
  3. Miriam Toosey

    Dear PAS, do you know whether the long-awaited NICE guideline on diagnosing and treating PA has been published?

    Reply
  4. Mo Walton

    The survey was easy to complete and questions were comprehensive. Would like to see areas where supplimentary comments can be made. Also greater questions regarding routine blood results that show ‘normal’ yet experiencing irratic symptons even though taking B12

    Reply

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